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Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making

Published online by Cambridge University Press:  01 January 2021

Megan Prictor ,
Sharon Huebner ,
Harriet J.A. Teare ,
Luke Burchill  and
Jane Kaye
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Abstract

Dynamic Consent (DC) is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people (First Peoples of Australia).

In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining (or redefining) DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation.

Type
Independent Articles
Information
Journal of Law, Medicine & Ethics , Volume 48 , Issue 1: LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application , Spring 2020 , pp. 205 - 217
Copyright
Copyright © American Society of Law, Medicine and Ethics 2020

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References

Tran, T. and Barcham, C., (Re)Defining Indigenous Intangible Cultural Heritage (Canberra: Australian Institute of Aboriginal and Torres Strait Islander Studies, Research Discussion Paper no. 37, 2018): at 6, available at <https://aiatsis.gov.au/sites/default/files/products/discussion_paper/dp_tranbarcham_final.pdf> (last visited February 25, 2020).Google Scholar
Food and Agriculture Organization of the United Nations, Free Prior and Informed Consent: An Indigenous Peoples’ Right and a Good Practice for Local Communities (2016), available at <http://www.fao.org/3/a-i6190e.pdf> (last visited February 25, 2020).+(last+visited+February+25,+2020).>Google Scholar
Kaye, J., Whitley, E. A., Lund, D., and Morrison, M. et al., “Dynamic Consent: A Patient Interface for Twenty-First Century Research Networks,” European Journal of Human Genetics 23, no. 2 (2015): 141–146, available at <https://www.nature.com/articles/ejhg201471> (last visited February 25, 2020); Budin-Ljøsne, I., A, H. J.. Teare, , Kaye, J., and Beck, S. et al., “Dynamic Consent: A Potential Solution to Some of the Challenges of Modern Biomedical Research,” BMC Medical Ethics 18, no. 4 (2017): 1-10, available at <https://doi.org/10.1186/s12910-016-0162-9> (last visited February 25, 2020).CrossRefGoogle Scholar
Turnbull, P., “‘Rare Work amongst the Professors’: The Capture of Indigenous Skulls within Phrenological Knowledge in Early Colonial Australia,” in Creed, B. and Hoorn, J., eds., Body Trade: Captivity, Cannibalism and Colonialism in the Pacific (London: Routledge, 2013): 3–23.Google Scholar
Stumpe, L. H., “Restitution or Repatriation? The Story of Some New Zealand Maori Human Remains,” Journal of Museum Ethnography no. 17 (2005): 130–140.Google Scholar
Kowal, E., Radin, J., and Reardon, J., “Indigenous Body Parts, Mutating Temporalities, and the Half-Lives of Postcolonial Technoscience,” Social Studies of Science 43, no. 4 (2013): 465–483.CrossRefGoogle Scholar
Paterson, R. K., “Heading Home: French Law Enables Return of Maori Heads to New Zealand,” International Journal of Cultural Property 17, no. 4 (2010): 643–652.CrossRefGoogle Scholar
See id.Google Scholar
Turnbull, P., Science, Museums and Collecting the Indigenous Dead in Colonial Australia (Cham, Switzerland: Palgrave Macmillan US, 2017).CrossRefGoogle Scholar
Thornton, R., “Repatriation as Healing the Wounds of the Trauma of History: Cases of Native Americans in the United States of America,” in Fforde, C., Hubert, J., and Turnbull, P., eds., The Dead and Their Possessions: Repatriation in Principle, Policy and Practice (London: Routledge, 2002): at 17.Google Scholar
Sellevold, B. J., “Skeletal Remains of the Norwegian Saami,” in Fforde, C., Hubert, J., and Turnbull, P., eds., The Dead and Their Possessions: Repatriation in Principle, Policy and Practice (London: Routledge, 2002): at 59.Google Scholar
Carvajal, D., “Museums Confront the Skeletons in Their Closets,” New York Times, May 24, 2013, available at <https://www.nytimes.com/2013/05/25/arts/design/museums-move-to-return-human-remains-to-indigenous-peoples.html> (last visited February 25, 2020); Pakianathan, R., “Excavated Inuit Bones Returned to Avataq Culture Institute,” The Dartmouth, September 13, 2018, available at <http://www.thedartmouth.com/article/2018/09/inuit-bones> (last visited February 25, 2020); Mello, M. M. and Wolf, L. E., “The Havasupai Indian Tribe Case — Lessons for Research Involving Stored Biologic Samples,” New England Journal of Medicine 363, no. 3 (2010): 204–207.Google Scholar
National Centre for Indigenous Genomics, The NCIG Collection, available at <http://ncig.anu.edu.au/ncig-collection> (last visited February 25, 2020).+(last+visited+February+25,+2020).>Google Scholar
Easteal, S., “A Science That Speaks Across Cultures,” Impact 10 (2018): 72–74, doi.org/10.21820/23987073.2018.10.72; National Centre for Indigenous Genomics Statute 2016 (Cth) (Austl.).CrossRefGoogle Scholar
National Centre for Indigenous Genomics Website, available at <http://ncig.anu.edu.au/ncig-collection> (last visited February 25, 2020).+(last+visited+February+25,+2020).>Google Scholar
See id.Google Scholar
Australian Centre for Ancient DNA, Aboriginal Heritage Project, University of Adelaide Website, available at <https://www.adelaide.edu.au/acad/ahp/> (last visited February 25, 2020).+(last+visited+February+25,+2020).>Google Scholar
Tobler, R., Rohrlach, A., Soubrier, J., and Bover, P. et al., “Aboriginal Mitogenomes Reveal 50,000 Years of Regionalism in Australia,” Nature 544, no. 7649 (2017): 180–184, Supplementary Information: 1–14, available at <https://media.nature.com/original/nature-assets/nature/journal/v544/n7649/extref/nature21416-s1.pdf> (last visited February 25, 2020).CrossRefGoogle Scholar
Popejoy, A. B. and Fullerton, S. M., “Genomics Is Failing on Diversity,” Nature 538, no. 7624 (October 12, 2016): 161–64, available at <https://www.nature.com/news/genomics-is-failing-on-diversity-1.20759> (last visited February 25, 2020).CrossRefGoogle Scholar
Cornel, M. C. and Bonham, V. L., “Genomics for All in the 21st Century?” Journal of Community Genetics 8, no. 4 (October 1, 2017): 249–251.CrossRefGoogle Scholar
“23andMe to Reduce African Americans Health Research Disparities,” CenterWatch News Online, October 18, 2016, available at <https://www.prnewswire.com/news-releases/23andmenih-work-to-reduce-health-research-disparities-among-african-americans-300344210.html> (last visited March 13, 2020).+(last+visited+March+13,+2020).>Google Scholar
Cavalli-Sforza, L. L., “The Human Genome Diversity Project: Past, Present and Future,” Nature Reviews Genetics 6, no. 4 (2005): 333–40.Google Scholar
Crigger, B., “The ‘Vampire Project,’” The Hastings Center Report 25, no. 1 (1995): 2.Google Scholar
For example, see Australian Centre for Ancient DNA, Aboriginal Heritage Project: Frequently Asked Questions (FAQs), University of Adelaide Website, available at <https://www.adelaide.edu.au/acad/ahp/faqs.html> (last visited February 25, 2020).+(last+visited+February+25,+2020).>Google Scholar
See id.; Tobler et al., supra note 18.Google Scholar
Kowal, E. and Radin, J., “Indigenous Biospecimen Collections and the Cryopolitics of Frozen Life,” Journal of Sociology 51, no. 1 (2015): at 73; The Report of the Working Group on Human Remains (UK: Department of Culture, Media and Sport, 2003): at 151, available at <https://plone.unige.ch/art-adr/cases-affaires/17-tasmanian-human-remains-2013-tasmanian-aboriginal-centre-and-natural-history-museum-london/working-group-on-human-remains-report-14-november-2003> (last visited February 25, 2020); Garrison, N.A., Hudson, M., Ballantyne, L. L., and Garba, I., et al., “Genomic Research through an Indigenous Lens: Understanding the Expectations,” Annual Review of Genomics and Human Genetics 20, no. 1 (2019): 495–517, available at <https://www.annualreviews.org/doi/abs/10.1146/annurevgenom-083118-015434?journalCode=genom> (last visited March 13, 2020).CrossRefGoogle Scholar
See Garrison et al., supra note 26.Google Scholar
Taylor, R., “Human Property: Threat or Saviour?” Murdoch University Electronic Journal of Law 9, no. 4 (2002), available at <http://www.murdoch.edu.au/elaw/issues/v9n4/taylor94.html> (last visited February 25, 2020).Google Scholar
Doodeward v. Spence (1908) 6 CLR 406 (Austl.).Google Scholar
See id.; Pecar v. National Australia Trustees Ltd (The Estate of Ivan Urlich deceased) (Unreported, Supreme Court of New South Wales, Bryson J, 27 November 1996) (Austl.); R v. Kelly [1999] QB 621 (UK).Google Scholar
The State v. Truesdale (1972)13 NC App 622.Google Scholar
Case law is not directly on point, focusing mostly on the preservation of whole corpses, bodily parts and gametes (see Goold, I., “Property in Human Biomaterials,” in Freckleton, I. R. and Peterson, K. A., eds., Tensions and Traumas in Health Law (Federation Press, 2017): at 367, 374); samples with donated consent for medical treatment (Moore v. Regents of the University of California, 51 Cal.3d 120 (Cal. 1990)), or samples collected by policy for testing in relation to an offence (R v. Rothery [1976] 63 Cr App R 231, CA (UK)).Google Scholar
See Doodeward v. Spence, supra note 29.Google Scholar
Skene, L., “Raising Issues with a Property Law Approach,” in Persons, Parts and Property: How Should We Regulate Human Tissue in the 21st Century (Oxford: Hart, 2014): at 263, 271.Google Scholar
Skene, L., “Arguments against People Legally ‘Owning’ Their Own Bodies, Body Parts and Tissue,” Macquarie Law Journal 7, no. 2 (2002): 165–176.Google Scholar
Goold, I., “Abandonment and Human Tissue,” in Goold, I., Greasley, K., Herring, J., and Skene, L., eds., Persons, Parts and Property: How Should We Regulate Human Tissue in the 21st Century? (Oxford: Hart, 2014): at 125, 149.Google Scholar
Kowal, E., “Orphan DNA: Indigenous Samples, Ethical Biovalue and Postcolonial Science,” Social Studies of Science 43, no. 4 (2013): at 591.CrossRefGoogle Scholar
Arbour, L. and Cook, D., “DNA on Loan: Issues to Consider When Carrying out Genetic Research with Aboriginal Families and Communities,” Public Health Genomics 9, no. 3 (2006): 153–60.Google Scholar
Yearworth v North Bristol NHS Trust [2010] QB 1 (UK).Google Scholar
See, for instance Black, C.F., The Land Is the Source of the Law: A Dialogic Encounter with Indigenous Jurisprudence (London: Taylor & Francis Group, 2010).CrossRefGoogle Scholar
See The Report of the Working Group on Human Remains, supra note 26: at 152.Google Scholar
Aramoana, J. and Koea, J., “An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research,” Journal of Global Oncology 5 (2019): at 5.Google Scholar
G.A. Res 61/295, United Nations Declaration on the Rights of Indigenous Peoples (Sept. 13, 2007).Google Scholar
ISBER Best Practices: Recommendations for Repositories, Fourth Edition (International Society for Biological and Environmental Repositories, 2018).Google Scholar
Jamieson, L. M., Paradies, Y. C., Eades, S., and Chong, A. et al., “Ten Principles Relevant to Health Research among Indigenous Australian Populations,” The Medical Journal of Australia 197, no. 1 (July 2, 2012): 16–18.Google Scholar
Kowal, E., Greenwood, A., and McWhirter, R. E., “All in the Blood,” Journal of Empirical Research on Human Research Ethics 10, no. 4 (October 2015): at 348.Google Scholar
National Centre for Indigenous Genomics Statute 2016 (Cth) (Austl.)Google Scholar
Radin, J. and Kowal, E., “Indigenous Blood and Ethical Regimes in the United States and Australia since the 1960s: Indigenous Blood and Ethical Regimes,” American Ethnolo-gist 42, no. 4 (2015): 749–765; van Holst Pellekaan, S. M., “Socially Responsible Genetic Research with Descendants of the First Australians,” Investigative Genetics 3, no. 22 (2012): 1-7, available at <https://investigativegenetics.biomedcentral.com/articles/10.1186/2041-2223-3-22> (last visited February 25, 2020); Beaton, A., Hudson, M., Milne, M., and Port, R. V. et al., “Engaging Maori in Biobanking and Genomic Research: A Model for Biobanks to Guide Culturally Informed Governance, Operational, and Community Engagement Activities,” Genetics in Medicine 19, no. 3 (2017): 345-51; McWhirter, R., Nicol, D. and Savulescu, J., “Genomics in Research and Health Care with Aboriginal and Torres Strait Islander Peoples,” Monash Bioethics Review 33, no. 2-3 (2015): 203–209; see Garrison et al., supra note 26.Google Scholar
See Kowal, supra note 37: at 589.Google Scholar
Anderson, I., Griew, R., and McAullay, D., “Ethics Guidelines, Health Research and Indigenous Australians,” New Zealand Bioethics Journal 4, no. 1 (2003): at 21–22.Google Scholar
Kowal, E., Rouhani, L., and Anderson, I., Genetic Research in Australian and Torres Strait Islander Communities: Beginning the Conversation (Lowitja Institute Discussion Paper, July 2011): at 8.Google Scholar
De, Y. G. Souza and Greenspan, J. S., “Biobanking Past, Present and Future: Responsibilities and Benefits,” AIDS 27, no. 3 (2013): 303–312.Google Scholar
Grady, C., Eckstein, L., Berkman, B., and Brock, D. et al., “Broad Consent for Research with Biological Samples: Workshop Conclusions,” American Journal of Bioethics 15, no. 9 (2015): 34–42; Strech, D., Bein, S., Brumhard, M., and Eisenmenger, W. et al., “A Template for Broad Consent in Biobank Research. Results and Explanation of an Evidence and Consensus-Based Development Process,” European Journal of Medical Genetics 59, no. 6–7 (2016): 295-309.CrossRefGoogle Scholar
Caulfield, T. and Kaye, J., “Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas,” Medical Law International 10, no. 2 (2009): 85–100.CrossRefGoogle Scholar
World Medical Association, Declaration of Taipei on Ethical Considerations Regarding Health Databases and Biobanks (2016).Google Scholar
Organization for Economic Co-operation and Development [OECD], OECD Guidelines on Human Biobanks and Genetic Research Databases (2009).Google Scholar
Stein, D. T. and Terry, S. F., “Reforming Biobank Consent Policy: A Necessary Move Away from Broad Consent toward Dynamic Consent,” Genetic Testing and Molecular Biomarkers 17, no. 12 (2013): at 855; Melham, K., Moraia, L. B., Mitchell, C., and Morrison, M. et al., “The Evolution of Withdrawal: Negotiating Research Relationships in Biobanking,” Life Sciences, Society and Policy 10, no. 16 (2014): 1-13, doi.org/10.1186/s40504-014-0016-5.CrossRefGoogle Scholar
National Health and Medical Research Council, National Statement on Ethical Conduct in Human Research (2007, updated 2018).Google Scholar
See Kaye et al., supra note 3.Google Scholar
See Budin-Ljøsne et al., supra note 3.Google Scholar
Teare, H. J. A., Hogg, J., Kaye, J., and Luqmani, R. et al., “The RUDY Study: Using Digital Technologies to Enable a Research Partnership,” European Journal of Human Genetics 25, no. 7 (2017): 816–22, doi.org/10.1038/ejhg.2017.57.CrossRefGoogle Scholar
Genetic Alliance, Platform for Engaging Everyone Responsibly, Genetic Alliance Website, available at <http://www.geneticalliance.org/programs/biotrust/peer> (last visited February 25, 2020).+(last+visited+February+25,+2020).>Google Scholar
Pattaro, C., Gögele, M., Mascalzoni, D., and Melotti, R. et al., “The Cooperative Health Research in South Tyrol (CHRIS) Study: Rationale, Objectives, and Preliminary Results,” Journal of Translational Medicine 13, no. 348 (2015): 1–16, doi.org/10.1186/s12967-015-0704-9.CrossRefGoogle Scholar
Teare, H. J. A., Morrison, M., Whitley, E. A., and Kaye, J., “Towards ‘Engagement 2.0’: Insights from a Study of Dynamic Consent with Biobank Participants,” Digital Health 1 (2015): 1–13, doi.org/10.1177/2055207615605644.CrossRefGoogle Scholar
Key Principles, Maiam Nayri Wingara Website, available at <https://www.maiamnayriwingara.org/key-principles> (last visited February 25, 2020).+(last+visited+February+25,+2020).>Google Scholar
Minari, J., Teare, H., Mitchell, C., Kaye, J., and Kato, K., “The Emerging Need for Family-Centric Initiatives for Obtaining Consent in Personal Genome Research,” Genome Medicine 6, no. 118 (2014): 1–3, doi.org/10.1186/s13073-014-0118-y.CrossRefGoogle Scholar
Latulippe, K., Hamel, C., and Giroux, D., “Social Health Inequalities and eHealth: A Literature Review with Qualitative Synthesis of Theoretical and Empirical Studies,” Journal of Medical Internet Research 19, no. 4 (2017): e136, available at <https://www.jmir.org/2017/4/e136> (last visited February 25, 2020).CrossRefGoogle Scholar